P.E.I. man wants province to pay for treatment for his rare disease

A P.E.I. man is frustrated with government over a drug he believes is his chance at a more normal life.

Health PEI says drug not approved by Health Canada for the disease

Frederick (Ben) Rodgers says due to his condition he can't move very far from this chair. (Natalia Goodwin/CBC )

A P.E.I. man is frustrated with government over a drug he believes is his chance at a more normal life.

Frederick (Ben) Rodgers was diagnosed last year with primary autoimmune hemolytic anemia, a rare disease where a person's immune system attacks the red blood cells, leading to an insufficient number of oxygen carrying blood cells in the circulation. There is no cure.

"I can't really do anything," Rodgers said.

"The way you see me sitting now, this is where I spend my day and around 9 o'clock I crawl up the stairs and go to bed, and around 7:30 in the morning I crawl back down the stairs and into this chair." 

Rodgers has been on and off steroids and has been taking a chemotherapy drug in pill form. He said the steroid does seem to help with his condition, but it also has had a bad effect on his diabetes, and he says it is not recommended to stay on long-term. 

Another option he said his doctor suggested was to try an intravenous chemotherapy drug called Rituximab, sold under the brand name Rituxan, in the hopes of sending his disease into remission.

Rodgers says he used to be an active man, who volunteered a lot in his community. (submitted by Frederick Rodgers)

But Health PEI denied coverage for the drug for this specific condition.  

"It just upsets me, it makes me angry, it's like they just sort of throw you on the junk pile, you know," he said through tears.

"What do we pay our taxes for, you know...I just feel mentally drained, and upset and disgusted."

Not approved 

Health PEI said the reason for the denial is policy. 

"The drug in question was not approved by Health Canada for use to treat this individual's specific condition," an email statement from the organization said. 

Rituxan is not approved in Canada to treat Rodgers' condition, so Health PEI won't pay for the cost to treat him. ((CBC))

A spokesperson for Health PEI explained that each province makes a decision as to what drugs they will allow, and for which conditions they will use them for. New Brunswick does cover the drug for this condition, Saskatchewan and Manitoba would look at each case separately.

In Alberta, Rituxan or Rituximab is covered for rheumatoid arthritis and granulomatosis with polyangiitis or microscopic polyangiitis. Rituxan has also been accessed through the Short Term Exceptional Drug Therapy program, which considers requests from physicians, on a case-by-case basis, for life or limb threatening diseases.

"Health PEI does consult with clinicians when considering drugs to be added to the provincial formulary for coverage, taking into consideration a number of clinical factors before making a recommendation. Another important factor when considering a drug for public funding is whether or not the drug has been approved in Canada for treating a specific condition in question." the statement went on to explain.

'Off-label use'

In an email, Health Canada told CBC News "the decision of a physician to prescribe Rituxan for primary autoimmune hemolytic anemia would be considered off-label use, as the product does not currently have market authorization for that indication in Canada."

I'm sort of in a void.— Frederick Rodgers

Rodgers said he feels like he doesn't have many options left. He said his kidneys are not doing well thanks to the drugs he is on. 

"I'm 79 years old and I'm not sure how good my organs are at this point in my life …eventually one of the organs are going to give out," he said.

"That's pretty much where I stand right now. I'm sort of in a void, I don't know where I"m going or if anybody's going to help me." 

Another option for Rodgers is to pay for the drug himself. Health PEI says it would cost around $16 000. Rodgers has reached out to the legion both in Canada and in the UK where he served. They have promised around $9,000 combined. He has also reached out to the drug company asking for a compassionate discount, but has not heard back yet. 

About the Author

Natalia Goodwin

Video Journalist

Natalia is a video journalist in P.E.I. She has also worked for CBC N.L.